Do You See Me?

 

One of the more difficult aspects of this Lewy journey for me has been in how to handle the perception of the disease - both from me and from others. For most of this past year I have been trying to come to grips with what this Lewy body Dementia is and what it means for both me and - more importantly - my family. 

Some of the challenge comes from the terminology of the word "dementia". There is such a negative connotation and tremendous misunderstanding of the term. According to the Mayo Clinic, "Dementia is a term used to describe a group of symptoms affecting memory, thinking and social abilities. In people who have dementia, the symptoms interfere with their daily lives. Dementia isn't one specific disease. Several diseases can cause dementia." (https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013). The key is that those symptoms significantly interfere with daily activities such as decision making, reasoning, and attention. It's not like forgetting where you put your car keys or misplacing your grocery list.

Typically, however, when someone hears the word dementia, they automatically think Alzheimer's Disease. And also typically the end stages of Alzheimer's. While it is admirable and necessary that so much attention has been placed on AD, it is not the only form of dementia. Lewy body Dementia is the second most common form of dementia in the United States, affecting almost 1.4 million people. It is also quite different from AD - its origins in the brain as well as its impact on functions - as well as its progressions. There are similarities, however, because it is a type of dementia, and therein lies the confusion for so many. 

What frustrates me so often is that when someone finds out I have LBD, most people assume that I have Alzheimer's and that I am unable to understand what they are talking about or know who they are. While it is true that I have some significant cognitive impairment in some areas, I am not unable to follow a conversation or understand what is happening around me. 

It truly annoys me when we have to go to a new therapist or medical professional and they automatically turn to my wife or my daughters and exclude me from the discussion, as if I was no longer a real person and right there in front of them. Most of them have only ever read about LBD as a short blurb in a textbook at some point during their medical training, and don't have the most basic understanding of the disease, so they hear the word "dementia" and immediately turn to what they know of Alzheimer's patients in their interactions with me. They always assure us that they know all about LBD and then proceed to show that they know very little about the specifics of the disease and how it sets itself apart from other forms of dementia.

The first time we met with a new Speech Pathologist was shortly after I came out of the hospital with pneumonia, as I have been having difficulties swallowing and there was some concern about aspiration. As soon as she knew I had dementia, she and the graduate student working with her physically turned away from me and began talking to Michele like I was no longer in the room. It also happened several times while I was in the hospital, with one of the night time nurses talking to me like I was a 2 year old. It was both humiliating and frustrating.

I do have a slower thought process, which means that sometimes it takes me a bit longer sometimes to process what is being said and to formulate a response, and I sometimes lose words that used to come so easily. If there is a lot of noise or confusion - or multiple conversations occurring at the same time - I will often become confused or overwhelmed. But for the most part I am perfectly able to manage.

Even when I am struggling to find the words, or seem lost in my own thoughts, please remember I am right here in front of you. Don't forget to see me.